My Dad has just been diagnosed with multiple myeloma. He is 60 years old and has had a paraprotein in his blood for five years, for which he was attending regular check-up so that they would supposedly know if it ever turned into anything more sinister. He attended every appointment and nothing was detected.
He began to have very bad back pain and, following an MRI scan in March, it was discovered that he had a tumour on his spine. The tumour was removed and he had 10 sessions of radiotherapy. Small lesions were also discovered on his thorax, his lower spine, and his rib. However, because his kidney function, his calcium levels, and his haemoglobin are all normal, the doctors were puzzled. The first bone marrow biopsy they did was inconclusive, the second showed 6% plasma cells, but the most recent one showed 25-30 % plasma cells, which has finally, after 4 months of scans and tests, given him a definitive diagnosis of multiple myeloma.
He has been given the option to take part in a clinical trial. The trial is to examine the efficacy and safety of lenalidomide (Revlimid), subcutaneous bortezomib (Velcade) and dexamethasone combination therapy for patients with newly diagnosed multiple myeloma. We have been told that it is effective in treating the later stages of multiple myeloma, and they are trying to find out if it would be a good treatment early on.
I just wondered if anybody has had experience of this combination of drugs, or if anybody may be able to offer some advice and guidance, as it is all so new to us and it is so important that we make the right decision about his treatment. I would be very grateful if anybody could help in any way.
Forums
Re: Revlimid, Velcade, and dex for newly diagnosed myeloma?
Hello Daisy:
It might be helpful for you to advise your general location, i.e., country or region. The drug combination you names is shorthanded to RVD (for Revlimid, Velcade, and dex). This regimen, in the U.S., is the standard of care. You do not need to go on a clinical trial to get it. Accordingly, since you are advising that it's available on clinical trial, I am guessing that you might be in one of the European countries, for example, where Revlimid is not usually given for upfront treatment.
Bottom line is that RVD is one of the best available treatment regimens. What you should look at is what would be the alternative if you did not do the clinical trial, and decide based on that. One of the best references in coming up to speed is the Mayo Clinic's Msmart guidelines.
Here is the link: http://msmart.org/newly%20diagnosed%20myeloma.pdf
Good luck
It might be helpful for you to advise your general location, i.e., country or region. The drug combination you names is shorthanded to RVD (for Revlimid, Velcade, and dex). This regimen, in the U.S., is the standard of care. You do not need to go on a clinical trial to get it. Accordingly, since you are advising that it's available on clinical trial, I am guessing that you might be in one of the European countries, for example, where Revlimid is not usually given for upfront treatment.
Bottom line is that RVD is one of the best available treatment regimens. What you should look at is what would be the alternative if you did not do the clinical trial, and decide based on that. One of the best references in coming up to speed is the Mayo Clinic's Msmart guidelines.
Here is the link: http://msmart.org/newly%20diagnosed%20myeloma.pdf
Good luck
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JPC - Name: JPC
Re: Revlimid, Velcade, and dex for newly diagnosed myeloma?
Hi DaisyChain,
JPC has given you some very good feedback. The only thing that I would add is that you should find out whether the trial your father is considering is a single-arm or multiple-arm trial.
In a single-arm trial, all patients are given the same treatment regimen. In a multiple-arm trial, some patients get treatment regimen A, some patients get treatment regimen B, etc. (depending on how many arms there are).
So you will want to find out if all patients in the trial you're father is looking at will get Revlimid, Velcade, and dexamethasone. Or is it the case, for example, that some will be randomly selected to get only Velcade and dexamethasone combined with a placebo?
In any case, I hope your father responds well to whatever treatment he ends up getting.
JPC has given you some very good feedback. The only thing that I would add is that you should find out whether the trial your father is considering is a single-arm or multiple-arm trial.
In a single-arm trial, all patients are given the same treatment regimen. In a multiple-arm trial, some patients get treatment regimen A, some patients get treatment regimen B, etc. (depending on how many arms there are).
So you will want to find out if all patients in the trial you're father is looking at will get Revlimid, Velcade, and dexamethasone. Or is it the case, for example, that some will be randomly selected to get only Velcade and dexamethasone combined with a placebo?
In any case, I hope your father responds well to whatever treatment he ends up getting.
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Jonah
Re: Revlimid, Velcade, and dex for newly diagnosed myeloma?
Hi DaisyChain,
To add to Jonah's and JPC;s comments, you may want to find out what happens after this initial induction therapy is completed. Does he go on maintenance? Can he have a stem cell transplant. In the U.S., multiple myeloma patients typically have an induction treatment (RVD in many cases), followed by a stem cell transplant and/or maintenance. I'd want to know how participating in this trial would affect these options.
Best of luck,
Lyn
To add to Jonah's and JPC;s comments, you may want to find out what happens after this initial induction therapy is completed. Does he go on maintenance? Can he have a stem cell transplant. In the U.S., multiple myeloma patients typically have an induction treatment (RVD in many cases), followed by a stem cell transplant and/or maintenance. I'd want to know how participating in this trial would affect these options.
Best of luck,
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Revlimid, Velcade, and dex for newly diagnosed myeloma?
Thank you all for your replies and for your good wishes. I appreciate any advice as it is all so new to us. I am in Ireland. We meet with his Consultant next week to discuss all of his treatment options so it is good to know what we should be asking.
He has been told that he will have a stem cell transplant following chemotherapy, but I will definitely be asking whether this will still be the case if he does participate in the trial. Also, I will ask if there are placebos given to some patients.
JPC, just to clarify, is RVD given to treat the early stages of multiple myeloma in the US, and not just the later stages?
Thanks again to all of you for your replies. All of your input is invaluable to us when it is all so new and unknown.
He has been told that he will have a stem cell transplant following chemotherapy, but I will definitely be asking whether this will still be the case if he does participate in the trial. Also, I will ask if there are placebos given to some patients.
JPC, just to clarify, is RVD given to treat the early stages of multiple myeloma in the US, and not just the later stages?
Thanks again to all of you for your replies. All of your input is invaluable to us when it is all so new and unknown.
Re: Revlimid, Velcade, and dex for newly diagnosed myeloma?
Hello again, Daisy:
As we sometimes say, Failte to the forum, but I am sorry that we did not meet under better circumstances. I am from the Bronx, which at one time was called the 27th county.
A comment that many people make is that, at the very early days of dealing with this, it is indeed overwhelming and it is indeed a type of an information overload. Over time, however, you acquire a better understanding of the complexities and nuances of this condition. It is not simply like the measles, or the common flu.
In the US, if you are newly diagnosed with multiple myeloma, and your case is not too unusual, most of the patients (90 % ??, not exactly sure) get one of two options:
Opt 1: RVD
Opt 2 CyBorD
CyBorD uses a drug called Cytoxan (cyclophosphamide) instead of Revlimid. My wife received RVD as initial induction treatment, and then received an ASCT. We are not yet at CR, but close.
As you research and learn more about this, there is active research in multiple myeloma, and they are doing clinical trials on "next generation" treatments. I do not want to hit you with too much info upfront, but one of the treatments available on trial in the US is "KRD" – Kyprolis (carfilzomib), Revlimid, and dexamethasone.
In all of Europe, the approval process is somewhat longer. My understanding is that Revlimid is approved in Europe, but on a relapse, not after first diagnosis. RVD will at some point be approved, but who knows how long it will take.
Not an official medical opinion, but RVD on trial will be better than the "normal" available options in Ireland. CyBorD, however, would probably be a close second. If the alternative to RVD is CyBorD, that is good. If the alternative to RVD is an older regimen, then the drop off will be more pronounced.
Again, Best of luck
As we sometimes say, Failte to the forum, but I am sorry that we did not meet under better circumstances. I am from the Bronx, which at one time was called the 27th county.
A comment that many people make is that, at the very early days of dealing with this, it is indeed overwhelming and it is indeed a type of an information overload. Over time, however, you acquire a better understanding of the complexities and nuances of this condition. It is not simply like the measles, or the common flu.
In the US, if you are newly diagnosed with multiple myeloma, and your case is not too unusual, most of the patients (90 % ??, not exactly sure) get one of two options:
Opt 1: RVD
Opt 2 CyBorD
CyBorD uses a drug called Cytoxan (cyclophosphamide) instead of Revlimid. My wife received RVD as initial induction treatment, and then received an ASCT. We are not yet at CR, but close.
As you research and learn more about this, there is active research in multiple myeloma, and they are doing clinical trials on "next generation" treatments. I do not want to hit you with too much info upfront, but one of the treatments available on trial in the US is "KRD" – Kyprolis (carfilzomib), Revlimid, and dexamethasone.
In all of Europe, the approval process is somewhat longer. My understanding is that Revlimid is approved in Europe, but on a relapse, not after first diagnosis. RVD will at some point be approved, but who knows how long it will take.
Not an official medical opinion, but RVD on trial will be better than the "normal" available options in Ireland. CyBorD, however, would probably be a close second. If the alternative to RVD is CyBorD, that is good. If the alternative to RVD is an older regimen, then the drop off will be more pronounced.
Again, Best of luck
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JPC - Name: JPC
Re: Revlimid, Velcade, and dex for newly diagnosed myeloma?
Thank you so much for that information JPC. Thanks also for the Fáilte 
As you said yourself, it is an unfortunate way to have come into contact with each other. I am very sorry to hear that your wife is also a sufferer of multiple myeloma. I sincerely hope that she is doing well.
It is good to know that this combination of drugs is being used as a standard treatment in other countries. This reassures me that the trial is not as experimental as some others may be and that if he does choose to take part in it, my Dad will not be being used as a guinea pig in testing an entirely new drug. Side effects were something that we were concerned about if this combination was very new. Obviously, because it is used so frequently in the U.S., this combination must be a relatively safe option. When you hear the word 'trial', it can sound quite scary but it really is very reassuring to know that this treatment is widely used in the U.S.
Because my Dad's diagnosis has only been confirmed this week and we don't meet with his doctors again until next week, we are unaware of the other treatment options available to him. Until then, he can't really make a definite decision about the trial but all of the information that you have given me will undoubtedly be beneficial to him in making his decision.
Thanks, once again, JPC as it is such a stressful and worrying time and I really appreciate you taking the time to reply in such detail to my post
Daisychain
As you said yourself, it is an unfortunate way to have come into contact with each other. I am very sorry to hear that your wife is also a sufferer of multiple myeloma. I sincerely hope that she is doing well. It is good to know that this combination of drugs is being used as a standard treatment in other countries. This reassures me that the trial is not as experimental as some others may be and that if he does choose to take part in it, my Dad will not be being used as a guinea pig in testing an entirely new drug. Side effects were something that we were concerned about if this combination was very new. Obviously, because it is used so frequently in the U.S., this combination must be a relatively safe option. When you hear the word 'trial', it can sound quite scary but it really is very reassuring to know that this treatment is widely used in the U.S.
Because my Dad's diagnosis has only been confirmed this week and we don't meet with his doctors again until next week, we are unaware of the other treatment options available to him. Until then, he can't really make a definite decision about the trial but all of the information that you have given me will undoubtedly be beneficial to him in making his decision.
Thanks, once again, JPC as it is such a stressful and worrying time and I really appreciate you taking the time to reply in such detail to my post
Daisychain
Re: Revlimid, Velcade, and dex for newly diagnosed myeloma?
Daisychain,
Perhaps my own experience will help assuage some of your anxiety about the proposed trial for your father. You need to understand, however, as has been repeated many times in this forum, that each person's reaction to a drug regimen is highly personal.
I started treatment for myeloma at a very early stage. Had I chosen not to participate in a clinical trial, my drug regimen would have consisted of Revlimid, Velcade and dexamethasone. Instead, I took Revlimid and dexamethasone only and had three infusions of a monoclonal antibody as part of the clinical trial. I soon achieved what two specialists regarded as an "extremely deep" response, but from August 2014 to March 2015, the best that I got was what used to be called a "near complete response." Although I am of intermediate/high risk, I opted out of a stem cell transplant, but in April added Velcade to my drug regimen. The Velcade brought me to a complete response as of the end of May. Starting tomorrow, I will be doing Velcade maintenance once every two weeks, i.e., an injection into the abdomen twice a month.
The Velcade thus far has not caused any notable adverse side effects. My white and red cell counts are a little below normal, as are my platelets from time to time. The medications have brought all my immunoglobulins (IgA, IgG, and IgM) below normal. However, thus far I feel quite well and seldom feel tired. In fact, from the beginning of my treatment I have been walking a brisk three miles each day and am not bothered at all by the excercise.
Others in this forum have written about their experiences with Velcade, Revlimid and dexamethasone. I am sure you are reading their postings and getting a good picture of the pros and cons of these drugs.
Without really knowing what your father's circumstances are, I suggest that you need not worry about the combination RVD. All the myeloma drugs present problems in one way or another, but this combination is routinely and successfully used in America, as JPC has indicated, as part of induction treatment.
Best of luck to you and your family.
Perhaps my own experience will help assuage some of your anxiety about the proposed trial for your father. You need to understand, however, as has been repeated many times in this forum, that each person's reaction to a drug regimen is highly personal.
I started treatment for myeloma at a very early stage. Had I chosen not to participate in a clinical trial, my drug regimen would have consisted of Revlimid, Velcade and dexamethasone. Instead, I took Revlimid and dexamethasone only and had three infusions of a monoclonal antibody as part of the clinical trial. I soon achieved what two specialists regarded as an "extremely deep" response, but from August 2014 to March 2015, the best that I got was what used to be called a "near complete response." Although I am of intermediate/high risk, I opted out of a stem cell transplant, but in April added Velcade to my drug regimen. The Velcade brought me to a complete response as of the end of May. Starting tomorrow, I will be doing Velcade maintenance once every two weeks, i.e., an injection into the abdomen twice a month.
The Velcade thus far has not caused any notable adverse side effects. My white and red cell counts are a little below normal, as are my platelets from time to time. The medications have brought all my immunoglobulins (IgA, IgG, and IgM) below normal. However, thus far I feel quite well and seldom feel tired. In fact, from the beginning of my treatment I have been walking a brisk three miles each day and am not bothered at all by the excercise.
Others in this forum have written about their experiences with Velcade, Revlimid and dexamethasone. I am sure you are reading their postings and getting a good picture of the pros and cons of these drugs.
Without really knowing what your father's circumstances are, I suggest that you need not worry about the combination RVD. All the myeloma drugs present problems in one way or another, but this combination is routinely and successfully used in America, as JPC has indicated, as part of induction treatment.
Best of luck to you and your family.
Re: Revlimid, Velcade, and dex for newly diagnosed myeloma?
Thank you, mrozdav, it really helps hearing the experiences of others who have taken these drugs. I am sorry to hear that you, too, have multiple myeloma but pleased that you are doing okay. I have been reading about these treatments but there is so much to take in and so many possible side effects that it is all a bit overwhelming. Hearing the stories of people, like yourself, who have undertaken this regime and hearing the effects it has had, gives an invaluable insight into what may lie ahead for my Dad.
I am aware that different treatments affect different people in different ways.
Before beginning his radiation therapy, he was preparing himself for the worst in terms of side effects but managed to get through it with very few, going out for walks every day and more or less maintaining his normal level of activity.
Hopefully, like you, mrozdav, his myeloma is at an early stage, as it has not yet had any effect on his kidneys, haemoglobin levels or calcium levels. We will know more when we meet with his doctors next week.
Just one last question: Do you lose your hair with this combination of drugs? We were told that you generally don't lose your hair with chemotherapy for multiple myeloma, but in the list of side effects for these drugs, it says that you may lose your hair. I know everybody is different but is hair loss a side effect that is widely associated with this treatment or not? This would not be a deciding factor in whether to choose this treatment or not, but it would be good to be aware of this if it was something that was likely to happen.
Again, mrozdav, thanks so much for your input. It means a lot that people like you are willing to take the time to respond to me. I genuinely hope that you continue to feel good and to do well.
Daisychain
I am aware that different treatments affect different people in different ways.
Before beginning his radiation therapy, he was preparing himself for the worst in terms of side effects but managed to get through it with very few, going out for walks every day and more or less maintaining his normal level of activity.
Hopefully, like you, mrozdav, his myeloma is at an early stage, as it has not yet had any effect on his kidneys, haemoglobin levels or calcium levels. We will know more when we meet with his doctors next week.
Just one last question: Do you lose your hair with this combination of drugs? We were told that you generally don't lose your hair with chemotherapy for multiple myeloma, but in the list of side effects for these drugs, it says that you may lose your hair. I know everybody is different but is hair loss a side effect that is widely associated with this treatment or not? This would not be a deciding factor in whether to choose this treatment or not, but it would be good to be aware of this if it was something that was likely to happen.
Again, mrozdav, thanks so much for your input. It means a lot that people like you are willing to take the time to respond to me. I genuinely hope that you continue to feel good and to do well.
Daisychain
Re: Revlimid, Velcade, and dex for newly diagnosed myeloma?
Daisychain,
Revlimid, Velcade, and dexamethasone, technically speaking, are not chemotherapy drugs. Normally, they do not cause hair loss, and I myself have not experienced hair loss this past year. Chemotherapy drugs usually do cause hair loss which is why baldness is associated with stem cell transplants, procedures that involve high doses of chemo drugs.
With respect to my hair, in the last couple of months I have begun to notice that it appears much drier than it used to be. I believe that this is a side effect of the RVD. My skin also seems drier but I use moisturizer and that seems to help.
Revlimid, Velcade, and dexamethasone, technically speaking, are not chemotherapy drugs. Normally, they do not cause hair loss, and I myself have not experienced hair loss this past year. Chemotherapy drugs usually do cause hair loss which is why baldness is associated with stem cell transplants, procedures that involve high doses of chemo drugs.
With respect to my hair, in the last couple of months I have begun to notice that it appears much drier than it used to be. I believe that this is a side effect of the RVD. My skin also seems drier but I use moisturizer and that seems to help.
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